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The Autoinflammatory Diseases Alliance Registry of Monogenic Autoinflammatory Diseases Publisher



Gaggiano C1 ; Vitale A1 ; Tufan A2 ; Ragab G3, 4 ; Aragona E5 ; Wiesikszewczyk E6 ; Aitidir D7 ; Conti G8 ; Iezzi L9 ; Maggio MC10 ; Cattalini M11 ; Torre FL12 ; Lopalco G13 ; Verrecchia E14, 15 Show All Authors
Authors
  1. Gaggiano C1
  2. Vitale A1
  3. Tufan A2
  4. Ragab G3, 4
  5. Aragona E5
  6. Wiesikszewczyk E6
  7. Aitidir D7
  8. Conti G8
  9. Iezzi L9
  10. Maggio MC10
  11. Cattalini M11
  12. Torre FL12
  13. Lopalco G13
  14. Verrecchia E14, 15
  15. Paulis AD16, 17
  16. Sahin A18
  17. Insalaco A19
  18. Sfikakis PP20
  19. Marino A21
  20. Frassi M22
  21. Ogunjimi B23, 24, 25, 26
  22. Oprisbelinski D27
  23. Parronchi P28
  24. Emmi G28
  25. Shahram F29
  26. Ciccia F30
  27. Piga M31
  28. Hernandezrodriguez J32
  29. Pereira RMR33
  30. Alessio M34
  31. Naddei R34
  32. Olivieri AN35
  33. Giudice ED36
  34. Sfriso P37
  35. Ruscitti P38
  36. Gobbi FL39
  37. Kucuk H2
  38. Sota J1
  39. Hussein MA3
  40. Malizia G5
  41. Jahnzrozyk K6
  42. Sarihamidou R40
  43. Romeo M8
  44. Ricci F11
  45. Cardinale F12
  46. Iannone F13
  47. Casa FD16
  48. Natale MF19
  49. Laskari K20
  50. Giani T21
  51. Franceschini F22
  52. Sabato V41
  53. Yildirim D2
  54. Caggiano V1
  55. Hegazy MT3, 4
  56. Marzo RD42
  57. Kucharczyk A6
  58. Khellaf G43
  59. Tarsia M1
  60. Almaghlouth IA44, 45
  61. Laymouna AH3
  62. Mastrorilli V12
  63. Dotta L11
  64. Benacquista L9
  65. Grosso S46
  66. Crisafulli F22
  67. Parretti V1
  68. Giordano HF33
  69. Mahmoud AAMA3
  70. Nuzzolese R1
  71. Musso MD1
  72. Chighizola CB47, 48
  73. Gentileschi S49
  74. Morrone M13
  75. Cola ID38
  76. Spedicato V13
  77. Giardini HAM33
  78. Vasi I2
  79. Renieri A50, 51, 52
  80. Fabbiani A50, 51, 52
  81. Mencarelli MA52
  82. Frediani B49
  83. Balistreri A53
  84. Tosi GM54
  85. Fabiani C54
  86. Lidar M55, 56, 57
  87. Rigante D9, 14
  88. Cantarini L1
Show Affiliations
Authors Affiliations
  1. 1. Department of Medical Sciences, Surgery and Neurosciences, Research Center of Systemic Autoinflammatory Diseases and Behcet's Disease Clinic, University of Siena, Siena, Italy
  2. 2. Division of Rheumatology, Department of Internal Medicine, Gazi University Faculty of Medicine, Ankara, Turkey
  3. 3. Internal Medicine Department, Rheumatology and Clinical Immunology Unit, Faculty of Medicine, Cairo University, Giza, Egypt
  4. 4. Faculty of Medicine, Newgiza University, 6th of October City, Egypt
  5. 5. Division of Gastroenterology, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy
  6. 6. Department of Internal Medicine, Pulmonology, Allergy and Clinical Immunology, Central Clinical Hospital of the Ministry of National Defence, Military Institute of Medicine, Warsaw, Poland
  7. 7. Research Laboratory, Biodiversity, Biotechnology, Environment and Sustainable Development, Department of Biology, Faculty of Sciences, M'Hamed Bougara University, Boumerdes, Algeria
  8. 8. Pediatric Nephrology and Rheumatology Unit, Azienda Ospedaliero Universitaria (AOU) G Martino, Messina, Italy
  9. 9. Department of Life Sciences and Global Health, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
  10. 10. University Department of Health Promotion, Mother and Child Care, Internal Medicine and Medical Specialties (PROMISE) “G. D'Alessandro�, University of Palermo, Palermo, Italy
  11. 11. Pediatric Clinic, University of Brescia and Spedali Civili di Brescia, Brescia, Italy
  12. 12. Department of Pediatrics, Pediatric Rheumatology Center, Giovanni XXIII Pediatric Hospital, University of Bari, Bari, Italy
  13. 13. Rheumatology Unit, Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy
  14. 14. Rare Diseases and Periodic Fevers Research Centre, Universita Cattolica del Sacro Cuore, Rome, Italy
  15. 15. Department of Aging, Neurological, Orthopedic and Head and Neck Sciences, Fondazione Policlinico Universitario Agostino Gemelli Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS), Rome, Italy
  16. 16. Department of Translational Medical Sciences, Section of Clinical Immunology, University of Naples Federico II, Naples, Italy
  17. 17. Center for Basic and Clinical Immunology Research (CISI), World Allergy Organization (WAO) Center of Excellence, University of Naples Federico II, Naples, Italy
  18. 18. Division of Rheumatology, Department of Internal Medicine, Medical Faculty, Sivas Cumhuriyet University, Sivas, Turkey
  19. 19. Division of Rheumatology, Ospedale Pediatrico Bambino Gesu, IRCCS, European Reference Network (ERN) for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases (RITA) Center, Rome, Italy
  20. 20. Joint Academic Rheumatology Program, Medical School, National and Kapodistrian University of Athens, Athens, Greece
  21. 21. Unit of Pediatric Rheumatology, Azienda Socio-Sanitaria Territoriale (ASST) Gaetano Pini-Centro Specialistico Ortopedico Traumatologico (CTO), Milan, Italy
  22. 22. Rheumatology and Clinical Immunology, Spedali Civili and Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy
  23. 23. Departement of Pediatrics, Antwerp University Hospital, Edegem, Belgium
  24. 24. Center for Health Economics Research and Modeling Infectious Diseases, Vaccine and Infectious Diseases Institute (VAXINFECTIO), University of Antwerp, Antwerp, Belgium
  25. 25. Department of Rheumatology, Ziekenhuis Netwerk Antwerpen, Antwerp, Belgium
  26. 26. KidZ Health Castle, Universitair Ziekenhuis Brussel, Jette, Belgium
  27. 27. Rheumatology and Internal Medicine Department, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
  28. 28. Department of Experimental and Clinical Medicine, University of Florence, Florence, Italy
  29. 29. Behcet's Disease Unit, Rheumatology Research Center, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran
  30. 30. Department of Precision Medicine, Universita Degli Studi Della Campania Luigi Vanvitelli, Naples, Italy
  31. 31. Rheumatology Unit, Department of Medical Sciences, University and AOU of Cagliari, Cagliari, Italy
  32. 32. Vasculitis Research Unit, Autoinflammatory Diseases Clinical Unit, Department of Autoimmune Diseases, Hospital Clinic of Barcelona, August Pi I Sunyer Biomedical Research Institute (IDIBAPS), University of Barcelona, Barcelona, Spain
  33. 33. Rheumatology Division, Faculdade de Medicina, Hospital das Clinicas da Faculdade de Medicina da Universidade de Sao Paulo (HCFMUSP), Universidade de Sao Paulo, Sao Paulo, Brazil
  34. 34. Pediatric Rheumatology Unit, Department of Translational Medical Sciences, University of Naples Federico II, Naples, Italy
  35. 35. Department of Woman, Child and of General and Specialized Surgery, University of Campania Luigi Vanvitelli, Naples, Italy
  36. 36. Department of Maternal Infantile and Urological Sciences, Sapienza University of Rome, Rome, Italy
  37. 37. Rheumatology Unit, Department of Medicine (DIMED), University of Padova, Padova, Italy
  38. 38. Rheumatology Unit, Department of Biotechnological and Applied Clinical Sciences, University of L'Aquila, L'Aquila, Italy
  39. 39. Rheumatology Unit, San Giovanni di Dio Hospital, Firenze, Italy
  40. 40. Research Laboratory Toxicomed, Faculty of Medicine, Abou Bekr Belkaid University, Tlemcen, Algeria
  41. 41. Department of Immunology, Allergology, Rheumatology, Antwerp University Hospital, University of Antwerp, Antwerp, Belgium
  42. 42. Division of Ematology II, Ospedali Riuniti Villa Sofia-Vincenzo Cervello, Palermo, Italy
  43. 43. Faculte de Medecine, Service de Nephrologie, Centre Hospitalo-Universitaire Lamine Debaghine, Universite Alger 1 Benyoucef Benkhedda, Alger, Algeria
  44. 44. Rheumatology Unit, Department of Medicine, College of Medicine, King Saud University, Riyadh, Saudi Arabia
  45. 45. College of Medicine Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia
  46. 46. Clinical Paediatrics, Department of Molecular Medicine and Development, University of Siena, Siena, Italy
  47. 47. Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, University of Milan, Milan, Italy
  48. 48. Pediatric Rheumatology Unit, Azienda Socio-Sanitaria Territoriale (ASST) Gaetano Pini Centro Specialistico Ortopedico Traumatologico (CTO), Milan, Italy
  49. 49. Unit of Rheumatology, Azienda Ospedaliero-Universitaria Senese, Siena, Italy
  50. 50. Medical Genetics, Department of Medical Biotechnologies, University of Siena, Siena, Italy
  51. 51. Department of Medical Biotechnologies, Med Biotech Hub and Competence Center, University of Siena, Siena, Italy
  52. 52. Genetica Medica, Azienda Ospedaliero-Universitaria Senese, Siena, Italy
  53. 53. Bioengineering and Biomedical Data Science Lab, Department of Medical Biotechnologies, University of Siena, Siena, Italy
  54. 54. Ophthalmology Unit, Department of Medicine, Surgery and Neurosciences, University of Siena, Siena, Italy
  55. 55. Familial Mediterranean Fever (FMF) Clinic, The Chaim Sheba Medical Center, Ramat-Gan, Israel
  56. 56. Rheumatology Unit, The Chaim Sheba Medical Center, Ramat-Gan, Israel
  57. 57. The Sackler Faculty of Medicine, Tel-Aviv University, Tel-Aviv, Israel

Source: Frontiers in Medicine Published:2022


Abstract

Objective: The present manuscript aims to describe an international, electronic-based, user-friendly and interoperable patient registry for monogenic autoinflammatory diseases (mAIDs), developed in the contest of the Autoinflammatory Diseases Alliance (AIDA) Network. Methods: This is an electronic platform, based on the Research Electronic Data Capture (REDCap) tool, used for real-world data collection of demographics, clinical, laboratory, instrumental and socioeconomic data of mAIDs patients. The instrument has flexibility, may change over time based on new scientific acquisitions, and communicate potentially with other similar registries; security, data quality and data governance are corner stones of the platform. Results: AIDA project will share knowledge and expertise on mAIDs. Since its start, 118 centers from 24 countries and 4 continents have joined the AIDA project. Fifty-nine centers have already obtained the approval from their local Ethics Committees. Currently, the platform counts 337 users (122 Principal Investigators, 210 Site Investigators, 2 Lead Investigators, and 3 data managers). The Registry collects baseline and follow-up data using 3,748 fields organized into 21 instruments, which include demographics, patient history, symptoms, trigger/risk factors, therapies, and healthcare information for mAIDs patients. Conclusions: The AIDA mAIDs Registry, acts both as a research tool for future collaborative real-life studies on mAIDs and as a service to connect all the figures called to participate. On this basis, the registry is expected to play a pivotal role in generating new scientific evidence on this group of rare diseases, substantially improving the management of patients, and optimizing the impact on the healthcare system. NCT 05200715 available at https://clinicaltrials.gov. Copyright © 2022 Gaggiano, Vitale, Tufan, Ragab, Aragona, Wiesik-Szewczyk, Ait-Idir, Conti, Iezzi, Maggio, Cattalini, Torre, Lopalco, Verrecchia, Paulis, Sahin, Insalaco, Sfikakis, Marino, Frassi, Ogunjimi, Opris-Belinski, Parronchi, Emmi, Shahram, Ciccia, Piga, Hernandez-Rodriguez, Pereira, Alessio, Naddei, Olivieri, Giudice, Sfriso, Ruscitti, Gobbi, Kucuk, Sota, Hussein, Malizia, Jahnz-Rozyk, Sari-Hamidou, Romeo, Ricci, Cardinale, Iannone, Casa, Natale, Laskari, Giani, Franceschini, Sabato, Yildirim, Caggiano, Hegazy, Marzo, Kucharczyk, Khellaf, Tarsia, Almaghlouth, Laymouna, Mastrorilli, Dotta, Benacquista, Grosso, Crisafulli, Parretti, Giordano, Mahmoud, Nuzzolese, Musso, Chighizola, Gentileschi, Morrone, Cola, Spedicato, Giardini, Vasi, Renieri, Fabbiani, Mencarelli, Frediani, Balistreri, Tosi, Fabiani, Lidar, Rigante and Cantarini.